REVIEW
published: 19 May 2021
Edited by:
Dimpna Calila Albert-Brotons,
King Faisal Specialist Hospital &
Research Centre, Saudi Arabia
Reviewed by:
Federico Gutierrez-Larraya,
University Hospital La Paz, Spain
Michiel Dalinghaus,
Erasmus Medical Center, Netherlands
*Correspondence:
Ana Ubeda Tikkanen
ana.ubedatikkanen@
childrens.harvard.edu
Specialty section:
This article was submitted to
Pediatric Cardiology,
a section of the journal
Frontiers in Pediatrics
Received: 28 February 2021
Accepted: 20 April 2021
Published: 19 May 2021
Citation:
Ubeda Tikkanen A, Berry E,
LeCount E, Engstler K, Sager M and
Esteso P (2021) Rehabilitation in
Pediatric Heart Failure and Heart
Transplant. Front. Pediatr. 9:674156.
doi: 10.3389/fped.2021.674156
Frontiers in Pediatrics | www.frontiersin.org
doi: 10.3389/fped.2021.674156
Rehabilitation in Pediatric Heart
Failure and Heart Transplant
Ana Ubeda Tikkanen 1,2,3,4*, Emily Berry 5 , Erin LeCount 5 , Katherine Engstler 6 ,
Meredith Sager 6,7 and Paul Esteso 8,9
1
Department of Pediatric Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA, United States, 2 Department of
Cardiac Surgery, Boston Children’s Hospital, Boston, MA, United States, 3 Department of Orthopedic Surgery, Boston
Children’s Hospital, Boston, MA, United States, 4 Department of Physical Medicine and Rehabilitation, Harvard Medical
School, Boston, MA, United States, 5 Department of Physical Therapy and Occupational Therapy Services, Boston Children’s
Hospital, Boston, MA, United States, 6 Department of Otolaryngology and Communication Enhancement, Boston Children’s
Hospital, Boston, MA, United States, 7 Augmentative Communication Program, Boston Children’s Hospital, Boston, MA,
United States, 8 Department of Cardiology, Boston Children’s Hospital, Boston, MA, United States, 9 Department of
Pediatrics, Harvard Medical School, Boston, MA, United States
Survival of pediatric patients with heart failure has improved due to medical and surgical
advances over the past decades. The complexity of pediatric heart transplant patients
has increased as medical and surgical management for patients with congenital heart
disease continues to improve. Quality of life in patients with heart failure and transplant
might be affected by the impact on functional status that heart failure, heart failure
complications or treatment might have. Functional areas affected might be motor,
exercise capacity, feeding, speech and/or cognition. The goal of rehabilitation is to
enhance and restore functional ability and quality of life to those with physical impairments
or disabilities. Some of these rehabilitation interventions such as exercise training
have been extensively evaluated in adults with heart failure. Literature in the pediatric
population is limited yet promising. The use of additional rehabilitation interventions
geared toward specific complications experienced by patients with heart failure or heart
transplant are potentially helpful. The use of individualized multidisciplinary rehabilitation
program that includes medical management, rehabilitation equipment and the use of
physical, occupational, speech and feeding therapies can help improve the quality of life
of patients with heart failure and transplant.
Keywords: heart failure, heart transplant, rehabilitation, function, pediatrics, physical therapy, speech therapy,
feeding therapy
INTRODUCTION
The development of advanced heart failure management strategies and associated need for heart
transplantation in pediatric patients is increasing survival in pediatric patients with congenital
heart disease. This increase in survival will often be accompanied by suboptimal quality of life
and functional outcomes. Multidisciplinary rehabilitation programs will be critical to improve
patient outcomes.
Definition of Heart Failure
Heart failure is a complex clinical syndrome of inappropriate oxygen delivery secondary to a
number of physiologic derangements. These typically include congenital or acquired heart disease
with volume or pressure overload, inappropriate systolic function, inappropriate diastolic function
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Ubeda Tikkanen et al.
or inappropriate blood oxygen carrying capacity (1). Advanced
heart failure is that in which clinical symptoms cannot be readily
managed with medications and consideration of advanced
therapies including ventricular assist devices (VAD) and heart
transplantation are indicated.
Incidence and Prevalence of Pediatric
Heart Failure
Precise documentation of the incidence and prevalence of heart
failure in pediatric patients has been elusive, though significant
demographic and geographic differences in epidemiology are
evident. Incidence has been reported to range from 0.87/100,000
in the UK and Ireland while 7.4/100,000 in Taiwan (2). The
underlying cause is frequently associated with congenital heart
disease (CHD) or genetic cardiomyopathy in the USA while a
majority of pediatric patients with heart failure in Nigeria have
rheumatic heart disease (2). Prevalence has not been well-defined
in the United States; however, it has been reported that more
than 14,000 children are hospitalized yearly for heart failure
(3, 4). The development of advanced heart failure and associated
complications are closely tied to the underlying etiology of the
heart failure. In children with dilated cardiomyopathy (DCM)
cumulative incidence of recovery at 10 years after diagnosis
is >60% for patient with myocarditis, ∼35% in patients with
familial DCM and <20% in children with neuromuscular
disorders while the corresponding rates of transplantation and
death are each ∼10% for myocarditis, 30 and 10% respectively
for familial DCM and ∼20 and 60% respectively for children with
neuromuscular disorders (5).
Incidence of Heart Transplant Listing in
Pediatric Patients
A recent query from our group of the Organ Procurement and
Transplantation Network (OPTN), the American governmental
entity overseeing transplantation, noted 1,789 pediatric heart
transplant candidate (<18 years old) listings during a 33-
month period between 2016 and 2019 (6). This represents ∼650
pediatric heart transplant patients listed per year. Though the
number of pediatric heart transplants in the US has increased
yearly there remains a significant deficit relative to listings. The
number of pediatric heart transplants undertaken, according to
OPTN data, were 431 in 2017, 468 in 2018, 507 in 2019 and 461
in 2020. In addition to normal year-to-year variation there is a
potential for the COVID-19 pandemic to have affected the 2020
pediatric heart transplant numbers, which was well documented
in adult heart transplantation (7). Notably, COVID-19 infection
and multisystem inflammatory syndrome in children (MIS-C)
have also been reported to lead to cardiac dysfunction in pediatric
patients (8, 9). Thus, the effect of the COVID-19 pandemic on
the development of heart failure, need for transplantation and
availability of heart transplant donors and resources has yet to
be fully realized.
Evolving Complexity of Heart Failure
The epidemiology of pediatric heart failure and heart
transplantation in the United States and Europe has necessarily
reflected the parallel surgical management of CHD. As reported
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Rehabilitation in Pediatric Heart Failure
in the most recent report from the International Society of Heart
and Lung Transplantation (ISHLT), patients <1 year of age
undergoing heart transplantation had congenital heart disease
72% of the time between 1988 and 2004, while only 57% did
between 2010 and 2018 (10). This is in contrast to children 11–17
years of age who were transplanted with congenital heart disease
at similar rates, nearly 25%, in the corresponding eras (10).
Additionally, the complexity of patients with CHD has increased.
A longitudinal report from pediatric heart transplantations
undertaken at Stanford University, over a 40-year period 1974–
2014, describes a significant increase over time in the proportion
of patients with CHD, specifically those with single ventricle
physiology, as well as VAD support (11).
Outcomes for Single Ventricle Patients
Palliated to Fontan
It is notable that though the staged palliation of patients
to Fontan circulation has resulted in improved survival for
these patients (12) they continue to experience advanced heart
failure at increased rates (13). Retrospective analysis of the
Single Ventricle Reconstruction Trial, a prospective study of
infants undergoing the Norwood procedure randomized to either
Blalock-Taussig shunt or right ventricle to pulmonary artery
conduit, revealed that of the patients that were discharged home
after their procedure without transplant listing 14% achieved the
definition of advanced heart failure, including 2/3 that were listed
for transplantation and just over ¼ who died, by age 6 years (14).
Notably, poor exercise performance in Fontan patients has been
associated with increased morbidity and mortality (15) as has
poor CHQ-PF50 physical summary score (13).
Heart Transplant Waitlist
Once listed for heart transplant patients must wait for a donor
heart variable amounts of times depending on a number of
important variables including listing status, size, sensitization
and blood type, among others. The number of children listed
for heart transplantation is higher than the number of available
donor organs, resulting in increasing waitlist times, particularly
for children between 10 and 25 kg in weight and those with
O blood type (6). The adoption of ABO incompatible heart
transplantation for children <2 years of age resulted in improved
wait times for this population with comparable long-term post-
transplant outcomes (16, 17). Highly sensitized patients, those
with pre-formed anti-HLA antibodies against potential donors,
have been noted to have increased post-transplant morbidity
and mortality (18). Notably, in the absence of convincing
clinical evidence for a preferred strategy, management of these
patients varies regarding evaluation and response to existing anti-
HLA antibodies, desensitization, exclusion of potential donors,
and willingness to transplant against donor-specific pre-existing
antibodies. The most prevalent current strategy involves waiting
for donors against whom no unacceptable antibodies pre-exist,
which often leads to prolonged wait times and potentially
increased waitlist mortality (18, 19).
Ventricular assist devices have been increasingly used
in children waiting for heart transplantation with resulting
reductions in waitlist mortality (20). As technology and clinical
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Ubeda Tikkanen et al.
expertise has increased with approximately half of pediatric
patients currently being on VAD support at the time of
transplantation, though the proportion is smaller in single
ventricle patients (10). However, there is significant morbidity
associated with this invasive mechanical support strategy, most
importantly stroke and infections (21). Recent efforts through
the ACTION learning network to standardize stroke prevention
and anticoagulation in pediatric patients supported with Berlin
VAD have demonstrated an extraordinary reduction in the
rate of stroke from a baseline of 30% to <12% through a
multiinstitutional quality improvement strategy (22). In spite of
these improvements this population continues to suffer from
high burden of physical and neurologic limitation.
Pediatric Heart Transplant Outcomes
The overall outcomes for pediatric heart transplant recipients
are excellent, with 5-year and 10-year post-transplant survival
approaching 80 and 65% respectively. It is notable that outcomes
are also improving over time, with those in the most recent
era (2010–2017) having 1-year post-transplant survival of
∼90% compared to just below 70% for those in the earliest
era (1982–1991), owing primarily to improvements in the
operative, perioperative and early post-transplant management
including improvement in immune suppression (10). Notably
hypertension, tremor, diabetes, renal dysfunction, decreased
bone density and development of PTLD are common side effects
of immune suppression medications that can lead to significant
morbidity (23). One approach to ameliorate medication side
effects has been the utilization of steroid sparing regiments,
relying on induction therapy, with comparable outcomes (24).
A number of other important factors affect median survival
including age, rejection, presence of CHD and pre-transplant
need for mechanical support, among others. Patients <1 year of
age at transplantation have the highest perioperative mortality
risk, however they also enjoy the lowest rate of graft loss over
time, leading to the longest median survival, currently over
20 years (10). Patients in older age groups have comparable
perioperative risk to one another but older children have
increasing yearly rates of graft loss leading to progressively
shorter median survival rates (10). Children who experience an
episode of rejection requiring treatment during the first post-
transplant year have been shown to have increased rate of
graft loss over time (10). While donor factors are important,
including lifestyle factors like smoking and drinking (25) the
most important pre-transplant determinants of graft survival are
recipient specific such as need for peri-transplant mechanical
support, invasive ventilation, hepatic dysfunction and renal
replacement (26). Notably, while the use of ECMO is associated
with increased (27) pre- and post-transplant mortality the use of
VAD demonstrates equivalent post-transplant outcomes to those
patients not requiring mechanical support (28). The presence of
CHD, as compared to cardiomyopathy, is also associated with
decreased waitlist and post-transplant survival, particularly for
children aged 5 years old and younger (10). For single ventricle
patients, stage of palliation at transplantation is also associated
with changes in expected survival, with Fontan patients having
the highest survival.
Frontiers in Pediatrics | www.frontiersin.org
Rehabilitation in Pediatric Heart Failure
In addition to the evolving improvements in outcomes across
the board for pediatric heart transplant patients, >80% of
post-transplant patients have minor to no activity restrictions,
based on Lansky scores when evaluated at 1, 2, and 3-years
post-transplant (10). While these patients are burdened with
significant complications, the perception of quality of life among
these patients at ten-years post heart transplant is similar to the
population at large (29).
FUNCTIONAL IMPACT OF HEART FAILURE
AND HEART TRANSPLANT
Generally, when rehabilitation is discussed in patients with
heart failure or heart transplant, the focus has mainly been
around exercise capacity and exercise training. However, there
are other areas of function that might be impacted due to their
cardiac function, comorbidities/complications related to heart
failure and treatment for heart failure. As mentioned previously
the complexity of cases of CHD that get a heart transplant
has increased.
Parents of children with CHD commonly report these
children experience difficulty with learning, communication,
self-care, fine and gross motor skills. Additionally, these children
miss more days of school and participate in less extracurricular
activities than children with special healthcare needs without
heart disease (30). Children with heart failure will have some
degree of functional impact and will affect their quality of life
throughout their lifespan.
There are four main areas of function: gross motor related to
mobility/endurance, fine motor skills and activities of daily living,
speech/cognition and feeding. Each of these areas are treated
by specific rehabilitation therapists: physical and occupational
therapy, speech and language; and feeding. These interventions
will be described later in the paper.
Certain complications, comorbidities or secondary effects are
related to heart failure and will affect the patient’s function:
Neurologic
Stroke
The most common cause of stroke in children is CHD
or the treatment of CHD (31). Abnormal cardiac anatomy
and function can increase the risk of thromboembolism. A
general prothrombotic state can also be found in CHD as a
result of chronic illness, infection, iron deficiency anemia or
erythrocytosis, persistent low-grade inflammation, coagulation
system abnormalities, abnormal flow patterns and multiple
surgical interventions (32).
Some of the procedures used to support heart failure patients
also have a high neurologic risk. A prospective cohort study
revealed that 29% of patients on Berlin Heat have a at least one
neurologic event, with most of them occurring within the first 2
weeks after implant (21). Major efforts are currently being made
to decrease the incidence of stroke in VAD patients (22). For
patients placed on ECMO incidence of neurologic events was
12%, with longer the duration of ECMO and neonates being risk
factors (33). Of note, typical length of support on VAD is months
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or years, as opposed to days to weeks on ECMO. In adults having
a heart transplant in the setting of heart failure decreased the risk
for stroke (34).
These neurologic events can affect their muscle tone, their
mobility, use of upper extremities, participation in activities of
daily living, feeding (35), speech and language (36), cognition and
neurodevelopment (37).
Neuropathies
Whilst relatively rare these can also happen in patients who
undergo heart transplant and it can be related to positioning,
ischemia and secondary effects of some of the transplant
medication (38, 39). These injuries can result in motor and
sensory impairment as well as neuropathic pain depending on
the nerve and severity of the injury.
Neurodevelopmental Delays and Functional Impact
From CHD
As we have previously mentioned an important number of
pediatric cardiac transplants are complex CHD patients. There
has been extensive literature regarding neurodevelopmental
delays in patients with CHD with abnormal executive
function, cognitive and communication difficulties with
widely implemented management guidelines (40). There are also
descriptions of the acute functional impact of cardiac surgery on
CHD patients, with almost half of patients who undergo cardiac
surgery on cardiopulmonary bypass requiring rehabilitation
therapies in the acute post-operative setting (41). Parents of
children with congenital heart disease commonly report these
children experience difficulty with learning, communication,
self-care, fine and gross motor skills. Additionally, these children
miss more days of school and participate in less extracurricular
activities than children with special healthcare needs without
heart disease (42).
Decreased Exercise Capacity
Exercise capacity is decreased in patients with heart failure (43),
including those supported on VADs (44). Similar findings exist
for patients after heart transplant (45). This decreased exercise
capacity can significantly affect their quality of life.
Peak oxygen consumption, the gold standard for exercise
capacity, has been showed to be related to morbidity and
mortality in children with various forms of CHD (46–48) and
in adults following heart transplantation. It indicates an inability
of the cardiopulmonary system to meet the increased metabolic
demands of physical activity. Predicted Peak VO2 ranged from
25% to 43% in the immediate posttransplant period to 57–73% at
0.6–20 years. In a cohort of pediatric patients with VADs PVO2
was 19 ± 6.3 ml/kg/min (44).
In heart transplant patients this exercise limitation is mostly
due to the cardiac autonomic denervation that can lead to
chronotropic impairment (49) due to the loss of sympathetic
and parasympathetic innervation of the atrial node. Abnormal
vascular and muscular function (50) due to deconditioning and
secondary effects of immunosuppression treatment (51–53) can
also affect exercise capacity. Sometimes, the limitation is due to
impaired stroke volume (45). In patients with VADs exercise
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Rehabilitation in Pediatric Heart Failure
limitation is due to the inability to increase their stroke volume
(44) to meet increased metabolic demands.
Some of these limiting factors can improve with exercise
training such as deconditioning and vascular function. Over the
past few years there has been an increase in studies on exercise
training in patients with CHD, many have shown improvement
in exercise capacity (54, 55). Research in exercise training in
pediatric heart transplants (56, 57) is more limited but has shown
promising results. In adult transplant patients exercise training
has been shown to improve strength and exercise capacity (58),
decrease readmission risk (59) and increased long term survival
(60). Data on programs for patients with VAD is sparse (44, 61).
It has been shown to be a safe intervention in all of these
patient populations.
Feeding and Speech
Feeding
Dysphagia or feeding difficulties can entail difficulty with the
oral preparatory phase of swallowing (chewing and preparing
the food), the oral phase (moving the food or fluid posteriorly
through the oral cavity with the tongue, into the back of the
throat) and the pharyngeal phase (swallowing the food or fluid
and moving it through the pharynx to the esophagus). The
different parts of the process can be affected in patients who
undergo heart transplant and specially those who had a baseline
CHD diagnosis (62). Feeding difficulties are multifactorial and
incompletely understood in the CHD population (63, 64).
Risk factors for developing feeding difficulties in these
patients include neonatal age (65), use of TEE, prolonged
intubation, having a stroke or hypoxic ischemic encephalopathy,
a vocal cord paralysis/palsy, prolonged ECMO course and a low
birthweight (30, 66–68).
Complications of dysphagia have been shown to include
aspiration leading to pneumonia, respiratory arrest, progressive
chronic lung disease, malnutrition, increased risk of infection,
prolonged length of stay in hospital, and increased risk of death
(35, 69, 70). Therefore, early identification and treatment is
crucial for this patient population.
Speech and Language/Cognition
Communication and cognition can be affected due to multiple
reasons in patients with heart failure and transplant. Some of the
causes are shared with the feeding difficulties such as injury to
the recurrent laryngeal nerve with vocal cord paralysis/palsy (66),
prolonged intubation with laryngeal and vocal cord injury (71) or
stroke (32).
In the acute hospital setting some patients may be non-verbal
due to tracheostomy, mechanical ventilation and intubation (72).
Providing these patients with alternate forms of communication
may allow them to communicate more effectively with the
medical team and family might improve outcomes and increase
their participation in their rehabilitation process (73).
REHABILITATION PROGRAMS
The goal of Rehabilitation is to enhance and restore functional
ability and quality of life to those with physical impairments
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Ubeda Tikkanen et al.
or disabilities that can be temporary or permanent. To do so a
personalized program is developed depending on the needs of the
specific patient.
A Rehabilitation program can include medical management,
use of rehabilitation equipment as well as the involvement
of a variety of rehabilitation therapists that include physical,
occupational, speech and feeding therapists.
Recommendations for the different types of programs is based
on recommendations from rehabilitation medicine, the cardiac
surgical and medical teams, and the rehabilitation therapists both
in the in- and outpatient settings.
These programs and therapies can be provided in
different settings:
• Outpatient clinics for patients prior to surgery or that have
discharged home.
• Acute inpatient hospital setting for those patients admitted for
medical or surgical management of their heart condition.
• Acute inpatient rehabilitation for patients with major
functional impairments, who require ongoing acute medical
management, intensive rehabilitation therapies, education for
families, rehabilitation equipment evaluations and help with
the supports at home and in the community.
• School and Early Intervention.
Rehabilitation programs include the following
critical components:
Physical Therapy and Occupational
Therapy
Physical Therapists and Occupational Therapists play a vital
role in the life of a child with heart failure. Children with
heart failure are often referred to physical and occupational
therapy for treatment of developmental delays (74). Children
with congenital heart disease are at risk for early developmental
delays, development of cognitive dysfunction, impacts on quality
of life, delays in speech and language, deficits in attention,
visuospatial, and executive functioning as well as emotional
behavioral dysregulation (75). Heart transplant in infancy and
toddlerhood has been associated with mild delays in motor and
cognitive development (76).
Evaluation Process for Physical and Occupational
Therapy
Physical and occupational therapy evaluations begin with a
thorough chart review to understand the child’s diagnosis,
medical status and prognosis. The therapist will have an
understanding of basic lab values and how this may impact
evaluation and intervention as well as vital sign parameters for
activity. The therapist should collect a developmental history
from the patient and caregiver along with prior level of function,
previous need for therapy services as well as home set up and
caregiver support. It is also important to know if the child uses an
assistive device or bracing at baseline.
Physical Therapy
Children with heart failure often require physical therapy in a
variety of settings to improve exercise capacity and endurance,
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Rehabilitation in Pediatric Heart Failure
progress gross motor skills, restore function and improve quality
of life. Many children with heart failure may go on to be listed
for heart transplantation, therefore physical therapy plays an
important role to optimize the child’s endurance and function
prior to heart transplantation. Physical therapists will conduct
an examination, collaborate with patients and families to create
goals and establish a plan of care for children with heart failure.
The physical therapy examination will assess the child’s
impairments, activity limitations and participation restrictions
which will vary based on the child’s age, prior level of function
and current medical status. The physical therapy examination
may include assessment of muscle strength, joint range of
motion, sensory and proprioceptive testing, coordination,
balance, endurance, functional mobility, gross motor skills and
developmental skills.
The use of standardized assessments is recommended during
a physical therapy examination in order to obtain a quantifiable
measurement of a child’s baseline and enable measurable goals to
be set. Repeat use of standardized assessments at re-evaluation
will provide valuable data on the child’s progress. Infants and
toddlers with heart failure often present with delayed attainment
of gross motor milestones due to prolonged hospitalizations,
previous surgeries, decreased strength and endurance. Children
and adolescents with heart failure often present with decreased
exercise capacity and may also present with strength, balance
and coordination impairments due to pharmacological treatment
causing neuropathies as well as sedentary lifestyle. Selection of
a standardized assessment is made based on the child’s age and
specific areas of impairment or skills that have been identified as
areas of concerns by parents and providers.
The 6 min walk test is easily performed, widely available
and a well-tolerated test for assessing the functional capacity
of patients with heart failure in everyday practice (77). The 6-
min walk test has also been shown to have predictive value
for mortality or heart transplantation in children with dilated
cardiomyopathy who are 6 years of age or older for mortality
or heart transplantation (78). The Bruininks Oseretsky Test of
Motor Proficiency-2 (BOT-2) (79) can be utilized in children
and young adults ages 4–21 years of age to assess stability,
mobility, strength, coordination and object manipulation. The
Test of Gross Motor Development 3 (TMGD-3) (80) is a norm
referenced tool used to identify children with gross motor deficits
and is valid for children ages 3–11. The TGMD-3 is made up
of two subtests, locomotor and object control, encompassing
12 skills and can be administered in 15–20 min. This may
be appropriate to assess for gross motor deficits in children
with limited tolerance to activity. For the younger populations,
the Alberta Infant Motor Scale (AIMS) (0–18 months) (81),
Test of Infant Motor Performance (TIMP) (82) (34 weeks post
conceptual age to 4 months) and Peabody Developmental Motor
Scales 2 (PDMS-2) (83) (0–5 years of age) are useful tools
to assess gross and fine motor skills, identify developmental
delay and assign age equivalences when appropriate. The
TIMP has been widely used in the congenital heart disease
population to assess neuromotor performance before and after
open heart surgery (84–86). In the inpatient setting, limitations
in completion of standardized testing may exist due to presence
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of lines and tubes, post-surgical precautions, or limited tolerance
and endurance.
For quality-of-life assessments the PedsQL and CHQ-PF50
have been used in the pediatric cardiac population (13, 87).
Following an evaluation, the physical therapist will
synthesize the information gathered to create measurable
goals with the patient and caregivers and establish a plan
of care individualized for each child. Typical goals for
infants and toddlers with heart failure are to progress
gross motor skills. Goals for children and adolescents will
vary widely based on evaluative findings but may include
improving strength, balance, coordination, endurance and
functional mobility.
An individualized physical therapy plan of care is created
for each child and frequency of services is established. Physical
therapy intervention is especially important for children with
heart failure awaiting heart transplantation. Adult literature
has shown that physical rehabilitation can improve functional
capacity and quality of life, decrease hospitalizations and improve
mortality in adults with heart failure (88, 89). Literature
on its effect in the pediatric population is limited. A 2007
study by McBride and colleagues establishes that inpatient
exercise programs for children awaiting heart failure are safe
and feasible (90). Patients and caregivers will be educated
on progression of activity or developmental skills, energy
conservation techniques and postsurgical sternal precautions
when applicable.
Therapeutic interventions may vary depending on
the inpatient or outpatient setting and availability of
resources. Interventions will include facilitation of gross
motor skills, strength training, balance and coordination
training and endurance training. The physical therapist
will modify activity based on the child’s age, oftentimes
incorporating age-appropriate play to help engage
the child.
Occupational Therapy
Occupational therapists play an important role for patients
with heart failure. Occupational therapists are clinicians trained
to work with heart failure patients across the lifespan.
Occupational therapists are able to optimize the quality of
life and help restore function (91). The main areas of
care with these patients include occupation centered goals,
caregiver’s involvement, facilitation of social participation,
and improving quality of life. “In occupational therapy,
occupations refer to the everyday activities that people do
as individuals, in families, and with communities to occupy
time and bring meaning and purpose to life. Occupations
include things people need to, want to and are expected to
do” (92). A person’s occupations include activities of daily
living (ADLs), instrumental activities of daily living (IADLs),
health management, rest and sleep, education, work, play,
leisure, and social participation (93). All areas of occupations
can be impacted as one experiences heart failure throughout
their life.
Occupational therapy evaluations will focus on a
variety of performance skills and client factors including
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Rehabilitation in Pediatric Heart Failure
cognition, strength, ROM, coordination, development,
balance, functional mobility and ability to participate in
ADLs and play. An occupational therapist may complete
of standardized and non-standardized tests as determined
by the needs of the child and family, the identified
impairments the setting in which the evaluation takes
place. The use of standardized assessments assists in
establishing a baseline of occupational performance which
allows for objective measurement of progress after and
during intervention.
Following an evaluation, the occupational therapist will
develop an individualized plan of care that includes measurable
goals that are developed with the patient and caregivers. Typical
goals for infants and toddlers with heart failure are to progress
their developmental skills and provide education to the caregivers
for carryover. Goals for children and adolescents will vary
widely based on the findings but may include improving
functional strength and endurance, coordination, cognitive
retraining, visual motor skills, energy conservation techniques,
modifications for activities of daily living skills and coping
strategies. Occupational therapy interventions support patient’s
recovery and provide direct therapy to overcome any barriers that
prevent them from participating in their occupations.
Ventricular Assist Devices
In some instances, children with heart failure may require
advanced support and implantation of ventricular assist devices.
Post surgically, physical therapists and occupational therapists
play a role in early mobility and restoring function. Postoperative
precautions may be present following implantation of ventricular
assist devices including sternal precautions, presence of multiple
lines and tubes and vital sign parameters. Communication with
the medical team is vital to determine timing of early mobility,
specific precautions and vital sign parameters particularly during
mobility and ADLs. Additionally, therapists play an important
role in educating patients and families about postoperative
precautions and adjustment to daily activity with their new
device. This often includes education on sternal precautions,
drive line precautions, connecting the VAD to battery power, and
donning and doffing their VAD carrying device. As discussed
above, there is also a high risk of neurologic complications
associated with ventricular assist devices. Physical therapists and
occupational therapists will be vital in assessing for neurologic
compromise and treating impairments, activity limitations and
participation restrictions to restore function post operatively.
Following the immediate post-operative period, physical therapy
is often indicated for continued strength and endurance training
in preparation for heart transplantation. Occupational therapy is
vital to address orthotic and/or rehabilitation assistive devices as
well as adaptations to complete ADLs and engage in play based
and school activities while inpatient. For the neurodevelopmental
population, optimizing gross and fine motor skills prior to
transplant is the focus of physical and occupational therapy.
This often involves creative strategies and adaptations to
activities to accommodate the patient’s VAD and maintain safety
and precautions.
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Ubeda Tikkanen et al.
Exercise Training
In adults, there is evidence of improved exercise capacity after
cardiac rehabilitation in patients following heart transplantation
(58). In adults with heart failure these rehabilitation programs
reduce the risk of all-cause hospital admissions, as well as
reduce HF-specific hospital admissions in the short term. Cardiac
rehabilitation may confer a clinically important improvement in
health-related quality of life (94). These interventions have been
shown to be safe. The guidelines for cardiac rehabilitation are
well established (95–97) and there tends to be agreement amongst
countries (98).
However, in pediatrics evidence regarding the effects of
cardiac rehabilitation programs is growing but has shown
promising results (54). Evidence is even scarcer for heart
transplant patients (56, 57) and patients on VADs (61). Exercise
training in the pediatric cardiac population also appears to be
safe. Guidelines for exercise training in the pediatric cardiac
population have not yet been established but there is an
increasing interest in creating them.
We would like to highlight that exercise training in pediatric
patients with heart failure or transplantation might take place
years after their surgery, due to their ability to participate in
formal exercise testing and a structured exercise program. This
is different to adults who normally receive cardiac rehabilitation
after a surgical intervention.
Based on literature mostly focused on CHD and adults,
as well as clinical experience we would recommend the
following program:
Pre and Post-program Evaluation
A cardiopulmonary exercise test (CPET) prior to the program
is recommended to better understand the factors contributing
to a lower exercise capacity. A CPET will also help ensure the
safety of initiating a rehabilitation program and help structure the
exercise training component. Post-program it can help quantify
the impact of the program.
Exercise Training Program
Prescription
The patient will be provided with an individualized exercise
prescription based on the CPET, diagnostic testing, comorbidities
and goals of the patient. This prescription will follow the FITT
principle of exercise frequency, intensity, time, type, volume
and progression.
Location
Centered based programs last ∼12 weeks, with ideally two
supervised exercise sessions per week. The program should be
over seen by a medical provider. Some of the studies have
been homebased.
Program Components
• Aerobic training: should be the main component of the
program. Intensity can be established by the Borg Scale,
the Talk test and the heart rate reserve. However, the
heart rate reserve might not be applicable to the heart
transplant patients.
Frontiers in Pediatrics | www.frontiersin.org
Rehabilitation in Pediatric Heart Failure
• Resistance training: include exercises with low resistance and
a high number of repetitions.
• Warm up and cool down exercises.
• Education: regarding cardiac diagnosis, CV risk factors,
physical activity and nutrition.
Monitoring
Vitals Signs
Blood pressure, oxygen saturation and heart rate should be
taken before and after the program.
Telemetry
Depending on clinical recommendations.
Precautions
• Initiate further assessment of the patient if symptoms such as
dizziness especially if accompanied by drop in BP, concerning
arrhythmias, or chest pain or dyspnea felt to be cardiac in
nature appear.
• If on Telemetry: Exercise to be stopped if patient has
clinically significant STT wave changes, sustained ventricular
tachycardia, high grade ectopy or AV block.
Feeding and Swallowing: Assessment and
Management
Patients with VAD and recovering from heart transplant are at
significant risk of dysphagia (as described above) and timely
assessment of feeding skills and swallow function is crucial. A
speech-language pathologist (SLP) specializing in feeding and
swallowing should conduct a clinical assessment of feeding and
swallowing should as soon as the patient is deemed clinically
ready to consider oral feeding. In determining readiness for
assessment, the patient’s tolerance of enteral feeds, degree of
respiratory support and level of alertness should be considered.
In general, patients should demonstrate adequate tolerance of
gastric feeds prior to initiation of oral feeds as feeding intolerance
may impact both the desire to eat, as well as the safety. Given
increased risk of aspiration while on NIPPV (99) and post-
extubation (100–102), consideration of oral feeds should occur
once a patient is tolerating breathing on room air or low
flow nasal cannula only. With regards to level or alertness and
behavioral state, patients should be able to maintain a calm,
alert state for the length of a typical mealtime. In addition, the
patient needs to tolerate being in a typical feeding position for
age (i.e., semi-upright or sidelying for infants, sitting upright for
older children).
Clinical assessment of feeding and swallowing should consist
of thorough history gathering including baseline feeding
difficulties, risk factors for dysphagia, assessment of state and
baseline status, oral mechanism examination, assessment of vocal
quality, assessment of non-nutritive suck and oral reflexes in
infants, all prior to offering any oral trials. When offering oral
trials, clinicians should proceed slowly and with caution. In
infants, a very slow flow nipple should be utilized, in particular
if risk factors for aspiration from above have been identified. In
older children, oral trials should begin with ice chips or water
via teaspoon, proceeding to larger bolus size and consecutive
swallows dependent on if the patient is demonstrating any overt
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Ubeda Tikkanen et al.
signs of aspiration or signs of stress. Depending on state and
degree of deconditioning, small volume trials of purees and
developmentally appropriate solid foods can also be considered.
When offering solid foods, chewing skills, ability to fully
pulverize solids prior to swallowing and oral clearance should be
considered in determining safety for solids and choking risk. Oral
trials should be discontinued at any point where the patient is
demonstrating overt signs or aspiration or physiologic instability.
The primary focus of a clinical feeding and swallowing
evaluation should be on safety to proceed with oral trials,
including safe oral diet recommendation and need for further
instrumental assessment of swallow function. Additionally, a
patient’s interest in oral feeding and developmental feeding skills
should be taken into consideration. Patients should not be pushed
to participate in assessment if they are resistant, nor if they are not
alert enough to actively engage.
Many patients following heart transplantation will require
instrumental assessment of swallow function. Instrumental
assessment of swallow function should be considered if there
are overt signs of aspiration on clinical assessment, or if the
patient is considered at high risk of aspiration based on history,
in particular patients with neurologic insult (103, 104) or
known or suspected vocal fold immobility (62, 105). Timing of
assessment should be carefully considered, taking into account
level of alertness, sedative medications, need for respiratory
support and likely trajectory of improvement. Depending on the
patient’s age, willingness to participate, level of medical acuity
and mobility level, videofluoroscopic swallow study (VFSS) or
fiberoptic endoscopic evaluation of swallowing (FEES) can be
considered. There are advantages and disadvantages to each
exam and determining which type of assessment to pursue
should be discussed with the patient’s full medical team (106,
107). In patients with VAD, in particular, risks and benefits of
instrumental assessment need to be carefully weighed.
Management of dysphagia in pediatric patients with VAD or
following heart transplant will occur based on findings from
clinical and instrumental assessments of feeding and swallowing.
In patients found to aspirate on instrumental assessment,
strategies to improve airway protection from above should
be trialed during the instrumental assessment to determine
safety and improvement. These strategies may include altering
positioning, altering method of delivery of liquids (e.g., slower
flow nipple, straw cup, valved sippy cup), pacing bottle feeding
or adjusting bite size or food consistency, and thickening
liquids. Decisions regarding use of thickened liquids should be
guided by instrumental assessment of swallow function whenever
possible. Given increased incidence of silent aspiration in patients
with vocal fold immobility or neurologic insult, as well as
challenges with thickening liquids in the pediatric population
as a whole (108), use of empiric thickening is discouraged.
Usage of thickening agents should be discussed with medical
team prior to initiation, with consideration of patient’s age and
gastrointestinal history. In some instances, patients are found to
aspirate all consistencies on instrumental assessment of swallow
function, despite use of therapeutic strategies, and in these
cases, alternative means of non-oral nutrition and hydration
are necessary.
Frontiers in Pediatrics | www.frontiersin.org
Rehabilitation in Pediatric Heart Failure
Once a patient’s swallowing safety has been established
via clinical and instrumental assessment as appropriate, while
inpatient, feeding therapy should be provided with goals
of monitoring safety with oral feeds, and advancing oral
intake as tolerated. Clinicians should be closely monitoring
swallow function and signs of aspiration with oral trials,
and making adjustments to positioning, delivery method and
diet recommendations as appropriate. In addition, goals such
as reducing oral hypersensitivity and improving tolerance of
oral stimulation, as well as improving oral motor skills for
feeding can be addressed. In young patients who are deemed
unsafe for oral feeding, a plan for oral stimulation should be
provided to avoid development or worsening of oral aversion,
as well as to promote ongoing advancement of oral motor
skills for feeding. Oral stimulation should be developmentally
appropriate and may include use of pacifier, safe teething toys,
familiarization with feeding utensils and therapeutic tastes.
Principles of motor learning should be kept in mind when
treating both infants who are learning to swallow and in
retraining swallowing with older children (109). Parent education
and training are essential components of any feeding therapy
provided to infants and young children (110). Patients with
a history of congenital heart disease have increased incidence
of baseline feeding and swallowing difficulties (111, 112) and
may require extensive feeding therapy, extending beyond the
inpatient admission, to target acceptance of oral feeds and oral
motor skills. Inpatient clinicians should ensure that referrals
for feeding therapy through rehab or in the outpatient setting
are made.
Need for supplemental nutrition should be closely monitored
to ensure that opportunities for oral intake are maximized as
is safe, while nutrition and hydration needs are met (113).
Most patients will require at least temporary alternate means of
nutrition and hydration as their strength improves and swallow
function is assessed. The medical team should closely monitor
tolerance of gastric feeds and may determine that the patient
requires post-pyloric or parenteral nutrition. For the most part,
patients need to be tolerating gastric feeds to begin working
toward full oral feeding. Many patients will require longer term
non-oral means of nutrition if they continue to be deemed unsafe
to feed by mouth from a swallowing standpoint, do not have the
endurance to maintain full oral intake over time, or have oral
aversion and are working on acceptance of oral trials. Placement
of gastrostomy tubes does appear to be safe following pediatric
heart transplant (114), though need for long term supplemental
nutrition needs to be carefully considered on a case by case basis.
In particular, in patients who have not established oral feeding
prior to heart failure or heart transplant, earlier consideration
of gastrostomy tube placement may be indicated so as not to
prolong length of stay while working toward full oral feeding.
Thus, far there has been limited research regarding the
incidence and risk factors for dysphagia in patients with VAD and
following heart transplantation, and further study is indicated.
Further research regarding efficacy of strategies used to treat
dysphagia in this population are warranted. Long-term feeding
outcomes for patients who undergo early heart transplantation
should also be followed.
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Ubeda Tikkanen et al.
Speech Language, and Communication
Therapy
Children with heart failure may present with a broad spectrum
of speech, language, and communication needs. Given potential
baseline speech and language delays for patients with congenital
heart disease (115, 116), heightened risk for neurological
complication (21, 32, 36), and risk of communication
vulnerability related to medical or surgical intervention, a
speech-language pathologist may be an important part of a
child’s multi-disciplinary team. Depending on the patient’s
baseline skills, current skills, and a variety of variables related
to medical intervention and care, the goals of service delivery
by the SLP can be multifactorial to include provision of
developmental speech, language, and cognitive support,
rehabilitation of speech, language, or cognitive-communication
skills, and feature-matched assessment to promote functional
communication with providers, loved ones, and peers including
potential implementation of augmentative and alternative
communication (AAC).
To best support speech, language, and communication in
children with heart failure, the SLP may perform an initial
assessment or screening tailored to each child’s individual
needs, age, medical status, setting, and situation. Assessment
may include clinical observation, parent interview, language
sampling, standardized testing, or criterion referenced measures.
Given potential for risk of communication impairment in
children with heart failure across a variety of domains, initial
screening or assessment should include information gathering
and direct observation regarding hearing and vision status, vocal
cord function, language comprehension, social-emotional
functioning, articulation, language production, literacy,
cognition, sensory skills and needs, and motor profile. An
oral mechanism exam should also be conducted. Following
screening or assessment, the SLP will work with patients and
families to determine individualized goals of care. Treatment
recommendations may change depending on the child’s medical
status, setting, and areas of need.
In many instances, children with heart failure experience
prolonged hospitalizations due to medical complexity, surgical
interventions, VAD placement, or while awaiting heart
transplant. For patients with baseline speech and language
impairments prior to their hospitalization, carryover of
intervention in the acute care environment may be warranted
to support development of skills and to prevent regression,
particularly in the context of a prolonged admission. For children
with acute changes in their speech, language, or communication
profile, early intervention in the acute care setting is critical to
support communication access, early rehabilitation, and ongoing
monitoring of clinical status. As many children with heart
failure have extended hospital stays while waiting for transplant,
possibly following an acute neurological event, vocal cord injury,
or sensory impairment (e.g., vision or hearing), their access to
rehabilitation outside of the acute hospital setting can be limited.
Therefore, targeted intervention to support speech, language,
and cognitive communication should be implemented early for
optimal outcomes.
Frontiers in Pediatrics | www.frontiersin.org
Rehabilitation in Pediatric Heart Failure
Patients with heart failure may experience acute functional
communication difficulties or a non-speaking status secondary
to new communication impairments (e.g., neurologic
injury, prolonged intubation, delirium, vocal cord injury,
tracheostomy), or due to baseline communication impairments.
This inability to functionally communicate puts patients at
heightened risk of sentinel and adverse events, increased length
of stay, and can impact psychological well-being (117). Regarding
patients with heart failure or following heart transplant, an
inability to functionally communicate can impede their ability
to participate in other rehabilitation activities, which can hinder
progress. For patients with an acute non-speaking status or
with a functional communication difficulty, implementation of
augmentative and alternative communication (AAC) should be
considered to support a reliable way to effectively communicate
(118). The SLP should conduct a feature-matched assessment to
match the patient’s skills, strengths, and needs to available tools
and strategies (119). Interventions may include aided (involving
use of external materials such as writing tablets, communication
boards, speech-generating devices, etc.) and unaided (involving
use of one’s own body such as gestures, facial expressions,
eye gaze, blinks, etc.) strategies (120). AAC interventions to
support functional communication needs may change frequently
depending on patient status, needs, and preferences.
For ongoing speech, language, and communication needs
following heart transplant or discharge from the acute care
setting, continued intervention may be warranted to support
functional communication, academic participation, social
experiences, and improve quality of life. Ongoing interventions
and recommendations should be highly individualized to each
child’s specific needs based on findings from comprehensive and
dynamic assessment. Goals may be supportive in targeting areas
of need across a variety of communicative domains, including
expressive and receptive language, articulation, voice and
resonance, cognitive communication, literacy, and pragmatics.
For children who cannot functionally access spoken language,
implementation of AAC tools and strategies may be required
for ongoing communication access needs. Treatment goals and
recommendations, including areas targeted and frequency of
intervention, may change over time to meet evolving needs.
Changes in health status may also impact treatment approaches
or recommendations within this population.
Limitations of Rehabilitation Therapies in
the Acute Inpatient Hospital Setting
The acute care setting often poses challenges when completing
evaluations and providing direct interventions for all
rehabilitation therapists. These challenges are not limited
to medical instability, limits within the physical setting and time
constraints due to multiple medical providers and treatments.
Patients with heart failure are often attached to various medical
machines, lines and tubes that may require additional staff for
safety and monitoring of hemodynamic status during mobility,
ADLs, feeding and complicating communication. Many
medications used to treat heart failure may impact patients’ level
of arousal and ability to cognitively participate in their therapy
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Ubeda Tikkanen et al.
sessions. Infants often required prolonged hospitalizations
during critical periods of development. There is a challenge
in the acute care setting to normalize an infant’s environment
in a way that allows for them to progress their developmental
milestones. Children and adolescents who require prolonged
hospitalizations have interruptions in their daily routines and it
is difficult to simulate day to day activities and routines within
the acute care environment.
There is limited research in the pediatric setting on
appropriate exercise guidelines and vital sign parameters
particularly for children with very low ejection fraction.
Additionally, children with heart failure often exhibit growth
failure due to high metabolic demands and increased energy
expenditure, which can lead to failure to thrive and further
medical complications (121). Discussion with the medical team
is imperative to determine the appropriate precautions, vital sign
parameters and exercise guidelines. Future research should be
directed at determining activity guidelines and safe vital sign
parameters for children with heart failure.
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Frontiers in Pediatrics | www.frontiersin.org
Rehabilitation in Pediatric Heart Failure
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Survival has increased in children with heart failure,
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AU contributed to conception and design and writing of the
paper. EB, EL, KE, MS, and PE wrote sections of the manuscript.
PE overviewed the paper. All authors contributed to manuscript
revision, read, and approved the submitted version.
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Conflict of Interest: The authors declare that the research was conducted in the
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